An Italian doctor has been getting dramatic results with a new type of treatment for Multiple Sclerosis, or MS, which affects up to 2.5 million people worldwide. In an initial study, Dr. Paolo Zamb…
I find this article interesting because it mentions that this actress has been managing her MS with Tecfidera for six years. However, Tecfidera has only been on the market for three years. Unless she was part of the Phase 1 and Phase 2 trials at NIH, I think this is either a mistake or a lie.
This is a tough one, because it can apply to so many aspects of what goes on in my head. I could tell you what my inner-voice says when I consider going back to school, or what I thought the very second one of my babies called me “mommy,” but I’m not going there. However, when it comes to me and about me in general, I can tell you this: I am female. And because it seems trendy to preach about sexual orientation, I was born a female, and I am straight. Perhaps, I am middle-aged, and I’m a military wife and mom of 2 kids. I love to quilt and have a huge stash (a/k/a fabric collection for you non-quilters). Within 2 1/2 years of turning 40, I became and adult orphan. If you have not lost your parents, you will not understand what this means. It means my parents are not here to sing Happy Birthday to me over the phone every year, and I really loved when they did that. I keep from the world that I have a disease that I cannot seem to find time for in my life. I think I’m mourning for the simple things I used to do without preplanning when and how I will take my medication or pre-napping before my next action. I sometimes feel like everyone knows about my secret disease when I walk into a room. For the few that do know, I feel like they are always sizing me up to see if I look different. It hurts my feelings–for some ridiculous reason–that after I finally feel comfortable and secure enough with a friend to take the plunge and them let them in, that they respond by telling me that I do not look like I have MS. It pains me as an insult would, because I do not ever want to look like I have any affliction and am terrified of the possibility or probability of actually looking the part. So, I wonder, if the response after revealing the secret to friend, will someday be something other than that friend telling me that I do not look like I have a disease; when that happens, will I then be ticked that I look the part? When I hear that I do not look like I have MS, it confirms to me that someday I will. I do not want to look the part of having any illness, and when I’m told I look fine and disease free, out loud I say to them that I will never be at that point, but inside it is a very vivid fear that I drag around, because there are plenty of times when I am a neurological mess and look awful, but I either stay home, or I don’t get out of the car unless I absolutely have to, and I try not to engage in conversation too much because I sound like a babbling moron who either forgets what she is saying mid-sentence or just forgets random words–without any warning to me, the speaker. And sometimes, when I can’t avoid showing up (this happens on a daily basis), I think people must surely assume I am a closet alcoholic or drug user because I seem to be somewhere out in left field unable to focus on normal chit-chat. Those are the times I want to be invisible. I’m on a see-saw with MS–sometimes I’m way above it, and other times it is way above me.
Do you have a patient with “radiologically isolated syndrome” — and, if so, what do you tell your patient?
I plan to write more of my opinion about this story later, but I could not resist getting it out there immediately. I can think of at lease five reasons of “why” it may not be such a great idea for this guy to be a street cop with the NYPD, however, I can also easily give at lease five reasons to hire him to maybe take a support position with the NYPD maybe as a detective at a job with minimal traveling and, of course, he’ll need a comfortable chair and, of course air conditioning–and lots of it. If he is looking to be out and about patrolling the subways and navigating the miles and miles of stairs during the hot summer or extreme cold everyday, then I have to say that this is not a job for him. More to follow later.
And no, I’m not talking about a cat. This morning, after meticulously examining each of the 350 silvery roots of hair on my head, and then attempting to color them in with this cute little “in between” coloring stick, I noticed something else while my nose was within an inch of the bathroom mirror. At first, it startled me. There was no way it could be. No one warned me about this, so you could imagine the shock I was in when I found a strand of gray in my left eyebrow. It’s true. It happened. I really found a gray eyebrow hair. As if dealing with silver roots were not bad enough, now I may have to color my eyebrows, and not just for a fun fashion statement. After all, who wants to look in the mirror and see their eyebrows turning gray?
While rummaging through my cosmetic bag for the tweezers–which there was a strong possibility they may not have been there since my 16 year-old keeps ‘borrowing’ them–I realized that it was not just any ordinary eyebrow either. It was extra long and curvy. Sort of a rogue single hair hiding in my eyebrow, and it didn’t quite blend itself in with the others too well. I yanked that thing out so fast and furiously that I thought for sure I was bleeding. Then, it lay there on the bathroom counter and I cursed it. How dare such a thing even consider that it would be acceptable to grow on me. I banished it by washing it down the sink drain–with hot water–on my husband’s side of the bathroom counter so that it could not find its way out and find me the next time I am brushing my teeth.
And, so you have it. I plucked the stray gray and washed it right down the drain. That stray gray is gone for good.
Okay, so this past weekend surely proved itself to be a good one. It began with a train ride to NY and two concert tickets. My bestie and I had plans to see a concert hero of our from the past. We even joked about the possibilities of which 80’s band would he have as an opening act. So we met up at the hotel. Her bags were already in the room and since she had worked that day, she had quite a large suitcase compared to mine, which made me giggle because she is usually the minimalist, and I am the hoarder. However, her suitcase–which I later found out–was full of merchandise from the photo shoot she produced during the day. It was all fun. And we found this great store–sort of. In Greenwich Village. An outdoorsman’s or outdoorperson’s store. It contained high end rugged wear and survival items. Like very expensive axes. In NYC. How many expensive, artful axes could they possibly sell? And to whom? I must say that I picked up an AMAZING button-down luxurious cotton shirt as a souvenir which I do not regret one bit. Check it out if you ever find yourself there. Or here: https://www.bestmadeco.com
I think I need a personal assistant. A secretary. An aide. Someone willing to keep me on task, maybe share the driving and occasionally hang up clothing in my closet and keep my fabric and craft supplies organized while I’m being creative. A fairy godmother. Yes! That’s it–A Fairy Godmother. Anyone interested in applying for the job?
That darn Lenten Challenge is just looming overhead and still, nothing gets done around here. Aside from my usual driving (well, a little less today, because a very dear heart drove Bella home), a doctor’s appointment for Gi, a bit of laundry and some appointments made via telephone, it looks as if NOTHING is accomplished here. And those few things that I did actually do, were not difficult tasks. For three weeks now (oh, longer–who am I fooling?), I have been looking around this house in total disgust of our gluttony. We have too much stuff. We save too much stuff. There is so much stuff here, that it is sometimes difficult to find the items we need. I’m overwhelmed. And, if I have not already typed it–I keep having visions of what life will be life when we are fully organized here, but can’t do anything about it.
So, in order to conquer and gain control of this house, I’ve decided to put an ad out for a Fairy Godmother. It’s the best idea I’ve had since I hired professional personal organizers to help me unpack when we moved into this house. However, I’m not sure where to post the ad. Do I make a flyer and pin it to the bulletin board in Starbucks? Do I click my heels together three times? If only it were that simple. Oh, and I can’t hire those ‘professional’ personal organizers again. They charge way too much loot. They are very nice and really helped me get on my feet when we moved in, but they charge by the hour–with a minimum of two hours–which includes their travel time to and from my house, or back and forth from Goodwill, the thrift shop or garbage dump. Really. I paid more for those ladies to help me (and it was money well-spent because I could not have done it myself) than most people spend on total moving costs. They worked magic here–just like fairy godmothers–but I can’t hire them again. I can, however, hire someone at $15 per hour, but I would not know where to look. I’m a private person, so I would not ask a friend or neighbor to refer a hire, for fear that my new fairy godmother would squeal and tell the friend or neighbor that I have enough fabric to piece and bind 75 quilts, too many books to read in a lifetime, and enough clothing that I could wear two different outfits per day for 365 days–without repeats.
Who is this person and how do I get her here?
Good Bye, Fat February! You know who you are. You do this to me every year. You get me in a funk. You overserved too many gray days and snow and muckety-muck. Once again, I’m glad you are over. Welcome, March. I’m almost two weeks behind in gathering my 40 bags in 40 days. Can I blame that on February? So, since I’ve packed up and kicked out just ONE bag in that time, I have to fill 13 more before Wednesday. If I don’t do it all tomorrow, I will wake up on Wednesday owing 14 bags since Lent started. Like I said, good bye Fat February. Oh, and you made me eat way too much during your stay. So, There!
This past Tuesday being Mardi Gras, a neighbor had asked me what I plan to give up for Lent. I explained that I don’t usually give anything up, but I instead choose to give more during Lent. Whether it be by volunteering more of my time, adopting a family to help, making meals or donating pantry items for Christ House. I do indeed do more during Lent and plan to continue with that. http://www.ccda.net/programs_christhouse.php
This year though, living with purpose and intent must be important to me becasue I keep dreaming about accomplishing goals, running through finish lines and being in the best shape of my life. Do you know what it’s like waking up in the morning thinking you’ve just finished runing a half-marathon, are 30 pounds leaner and live in a harmonious well-organized home only to look around and be reminded that none of this has happened and you’re still fat, disorganized and not sure what your purpose in life is? Well, even if you haven’t, that’s happened to me twice this week. I can only interpret these dreams to be a sign from God that I should get off of my ass and live more purposefully.
Although it is Day No. 4 of Lent and I have not done anthing of the sort, I plan to challenge myself to 40 Bags in 40 Days. I got my inspiration from my friend, Kristina, who tagged this blog on her Facebook: White House Black Shutters. Wow. If you could see my basement (it causes me anxiety, panic and dizziness), you would agree that I am the perfect candidate to take on such a challenge. It will benefit many, many people. Obviously, my family will reap the benefit of the decluttering and de-chaosing, but others will as well, because there is a lot of good stuff and clothing down there that I will be giving away. As usual, it is taking me a few days just to sort through the brain clutter and plan my attack. I printed the list linked on the blog but at this point, I know it will take me too long to figure out what to write, so I have to just jump in. I’ll take pictures as I go, but not good ones because I can’t spend too much more time focusing on the production as I have already lost four days. And, yes, I will still give time, food, quilt blocks and assistance to others along the way.
We finally have a real snow day in NoVA. The kids are home from school, the husband is home as the DOD is closed for the day (I know, it sounds funny) and the fireplace is on–literally, because with just a flip of a switch–it is on. Nope, no kindling, no lugging messy logs through the house and no wasted time spent trying to find matches nor trying to light a fire.
So, what to do after the dishwasher is empty and the laundry done? I made myself a delicious cup of coffee and sat myself on the couch with my laptop to search for healthy recipes. Healthy, because I’m supposed to be working very hard to lose some weight. Did you read about my neighborhood’s diet club yet? Ugh, another weigh-in Wednesday tomorrow morning and I seriously doubt I’ve lost an ounce. It would be a miracle if I did being that in the past week I’ve eaten no less than a pound of Valentine chocolate, six brownies, probably what is equivalent to one pound of pasta, 3 pounds of various meats and cheeses and had my share of soft drinks. I’ve dreamt of exercising rather than actually doing it, and almost every moment I’ve worn something other than pajama bottoms heard myself cursing about how smothered, restricted and uncomfortable I feel while wearing such tight pants. So, while searching for healthy recipes, I remember how much the kids and I love Phó (Vietnamese Noodle Soup).
It is so yummy delicious from a nearby restaurant. We found the place when we first moved here, when it was just okay, but about 12 years ago, a new owner scoffed up the place and since then we consider it to be the best Phó on earth. Okay, so maybe in NoVA–because Lord knows, we have tried a few other places and Phó Bowl is the only one we find truly delicious. In the winter, the restaurant is like an extension of our own dining room. The owner has witnessed the kids grow up from mere toddlers to the teens they are now (actually, the first time we were there–with our wonderful neighbors at the time–Gigi was an infant in a car seat sitting on top of the table in front of me). More importantly, many, many, many dinners were had here together with my dear friend Kathleen and her two girls. Ironically, her husband and mine just don’t seem to have the same addiction to the soup as we do. Kathleen and her family moved away from NoVA about 5 years ago (I’ve been lost ever since), but when we talk or see each other, we pick up exactly where we left off. The other irony is that both of our husbands were simultaneously deployed (though hers was deployed much longer than mine was) or throughout the years, seemed to be away on TDY at the exactly the same time. So, needless to say, we had to feed the kids dinner during those times, and we managed to hit Phó Bowl sometimes twice a week. We had so much fun together, and of course the kids never failed to enjoy the company.
Which leads me to this: While searching for a recipe to recreate this wonderful elixir, I realized that I do not have to because the restaurant is so darn close to Post that it is nonsense to even try to cook it AND, I got sidetracked and accidentally found this Phó inspired tattoo which I think Kathleen and I both need. Check out #16 here: 27 Tattoos To Show Your Dedication To Food. Nah, neither of us would endure the kind of pain required to get such a thing emblazoned on our body, however, I think we’d wear it proudly on a t-shirt. Oh, and I can’t forget the photo of my kids “playing” in the snow:
For some absolutely, positively, ridiculous reason, I allowed myself to be coerced to attend the first of 17 weekly weigh-in diet, fitness rehab meetings in my neighborhood. And, yes, we all had to step on a scale, write our names on cute little tags which hung from mini mason jars and talk about the goals we will each set for ourselves for the SEVENTEEN WEEKS. The mason jars would be kept there, and for every meeting we attend, we will be awarded a plastic gem stone. There are even gemstones given for reporting pounds lost and reaching personal fitness goals. I may just have to accidently
smash drop my cute little jar which is decorated (of course) with a simple strand of twine looped through a brown bag colored tag. We got to keep the weigh-in number secret–see, now there’s something I can jot down in my invisible gratitude journal today.
Joking around–which I think I do best when I am nervous–I said to a friend across from me, “oh, crap, I feel like we are entering rehab, so I guess I better open my purse and take out the M&M’s, pizza and root beer.” Of course, she laughed out loud, and then I received what was a gentle, yet sweet, smille and nudge from a lovely neighbor who quietly pointed out that it was not my turn to “take the floor.” I don’t want to be here. Clearly, I am mortified that I had to be shushed, and now telling myself that this is not a good time to start any sort of fitness program, as I had not yet eaten a HUGE plateful of Fettucine Alfredo (the official food to eat before you surrender).
Okay, so I brought some fruit salad that I had quickly washed, cut up and thrown in a bowl before I left the house. Our hostess was clearly not prepared to serve anything–which only embarrassed me more because I had blatantly assumed we’d be having mimosas or at least coffee while planning our fitness goals for the next SEVENTEEN WEEKS. She did, however, pass out little Ziploc baggies full of popcorn, and as she passed one over to me, I heard her tell me with a smile that it was a 200 calorie serving. All I really wanted to do, was ask her if she had a few more, because no little Ziploc baggie of popcorn has EVER been a satisfying snack for me. So, really why did I even take it? All the other ladies, thanked the hostess for their treat bag and put it away in their purse or next to their coat. Me? Oh, no, I ripped the mutter focker opened and was nervously shoving popcorn in my mouth. At this point, I am an expert in self-humiliation. I should get at least one gem stone for that little success. Truly.
We had to sign in too, and list our names, cell phone numbers and email addresses, and indicate whether or not we have Facebook. One of the diet/fitness idea gurus of the group is going to create a closed Facebook group so she can send us daily inspirational messages while we are on the SEVENTEEN WEEK highway to hell journey. Before leaving, I was rehearsing scenarios in my head. Wondering how the hell to get out of this mutter focken group. How can I do this, without them throwing tomatoes at my house? I was even considering divulging about my secret disease and hoping there was a way to tell the group that I could not eat lower than a 4,000 calorie per day diet because of it. I chickened out on that idea. Put my coat on to cover up my fat ass and I was out of there. Yes, I got in my car and drove home, and waved to the other ladies walking along on the sidewalk who were not lazy enough to drive there.
Ever since I got back home, I seem to have developed this weird twitch-like tremor in my left index finger (why is it called ‘index finger’ anyway). I’m wondering if the meeting made me so nervous that I’ve acquired a tic. There, if that is in fact the reason for it, then I will have to get a doctors’ note to excuse myself from the SEVENTEEN WEEK diet group. Oh, a 17 week plan was chosen because: a.) that’s when our hostess’s husband returns from deployment; b.) it ends the last full week before everyone starts PCS’ing out of here; and c.) the pool opens at the end of the SEVENTEENTH week, silly.
So, last night I attended my first high school basketball game since well, maybe, ever. I cannot remember ever going to a basketball game at my high school and if I did, I’m sure it was just for an appearance because I probably left five minutes after getting there. I did not really go for the game, I was there to support my daughter’s cheer team. This is her second season cheering, with the first being a JV cheerleader for JV football. There was not a big draw at tryouts for basketball cheer, so JV and Varsity cheer combined forces for basketball season, so my girl is now a Varsity cheerleader.
I arrived at the game thinking for sure that I would be bored out of my mind when the girls were not cheering. It’s not that I was being negative, I had just assumed that I would not be interested in the game because I don’t have a kid playing. I was so wrong. Our team played so well, the game was so exciting, and the kids in the bleachers were unbelievably enthusiastic and spirited. The spectator students from our school decided to dub the stands ‘Beach Out,” and they were all dressed in beach vacation themed attire. Some wore Hawaiian shirts, flip-flops, board shorts, grass skirts, fanny packs!, straw hats, sunglasses and the funniest of all, was the boy wearing a coconut shell bikini top over his shirt. This beach theme may not sound like such a big deal, but it is the middle of January and it was 25 degrees outside!
Back to the game itself, I can’t help but noticing that our boys use the same 2 plays over and over and over. There were a few times that I found myself laughing out loud at this one move…whenever our teams were playing offense, the same three boys would set up their shot by forming a basic 3 point pass back and forth over and around the heads of the other team. By doing these fast passes overhead, the other team members would be quickly looking back and forth following the ball in the triangle pattern–sort of the way a dog’s head moves up and down every time you stab a piece of meat on your dinner dish and pull it up to your mouth–or like watching a tennis match–and a few times it reminded me of Monkey in the Middle. After no less than 6 overhead passes back and forth, an eyebrow would raise and the ball was inevitably passed to that particular eyebrow raiser and he would shoot for a goal. It was HILARIOUS to me. I tried to explain how funny it was to the woman sitting diagonally behind me, but I’m not sure she even realized it was the same play over and over up and down the court. So there I was, not only at a high school basketball game, but enjoying it AND laughing my ass off. The only other people I know that would find it as hysterical as I did would be my sister and my friend Jen, who lives in Vermont. Man, if they were there, one of us would surely have peed our pants we’d be laughing so hard. I still cant figure out why it seemed as if no one else recognized that it was repeatedly the same play nor saw the humor in it. Weird.
Before basketball again, did I mention that the cheer team has 15 girls on it and that they did a great job? Now back to the game…so the visiting team was getting tired and a bit nervous about the game, so from the beginning of the last period they started getting a little physical with our boys and were using some full contact nudging to trip up our players. One of our defense players stole the ball and came speeding downcourt with his eye on the hoop, but he got bumped, the ball left his hands in an epic fall and slid on his stomach, straight past the goal and into the cheerleaders. The whistle blew, the ball put back into play and suddenly 3 boys from the other team stopped dead on the court while pointing to the circle between their size 13 shoes, looked up at the ref and their mothers in the stands and had horrified expressions on their faces as if to say, “DUTY!” The ref called a time out, the crowd stood up in their seats, the mothers of the three boys were each squinting to catch a glimpse of what their boys were pointing at, and as if in slow motion, the first-aider jumped up from her table and ran to the boys with a towel in hand. The towel was thrown down on to the court within the circle of the boys’ feet and she wiped up what appeared to be: nothing. Everyone sighed with relief and the game was back on. I’m clueless as to what just happened. I was thinking, “was it in fact a duty?” I asked the parent next to me and she explained that when the other kid slid on his stomach across the court and into the cheerleaders, that he had left a dangerous amount of sweat on the floor. I had no idea that this was even a thing. Maybe because I don’t watch basketball. I did a few times when I visited my dad as he became an avid fan just for the last 4 years of his life (I don’t ever recall him having an interest in the game before LeBron joined the Heat and his CNA forced him to watch), but I do not ever remember a timeout for a deck swabbing.
After the game, I was in charge of driving home two cheerleaders and two Hawaiian shirt wearing tourists, one of whom was wearing a fanny pack. Walking out to my car was another hilarious moment for me. I could not stop laughing whenever I saw her fanny pack. She was all serious and everything while wearing a vintage 1985 fanny pack, but what made it funnier was when we got in the car and she and her brother explained to us that it belonged to their mom, and that that morning before school, their mom told her to take special care of it because it was a good fanny pack that meant a lot to her because she wore while on her honeymoon with their father. I was behind the wheel of my car howling while they were telling the story, because they then said that their mom still uses it whenever they are on vacation or go in to DC for the day. From the back seat, I heard, “you know, it’s a real workhorse of a multitasker; it can be a belt and a handy place to keep your personal items all at once while being handsfree.” These kids are so much fun to listen to. They each have such an intelligent sense of humor and when they are together, they can laugh for hours.
So, before we went home, I took them for pizza and the restaurant has a chalkboard strip on the wall behind the booth. As if I had not laughed hard enough, one of the cheerleaders (okay, not my daughter) decided to tag the wall behind her with graffiti, only she misspelled it. Which made tears roll down my face. Again, she has a great sense of humor so she knew we were laughing with her and not at her. I feel like my daughter is having all the fun in high school that I did not experience. Don’t get me wrong, I had fun, but it was an entirely different type of fun which would never have included my mom hanging out with me and my friends. Too bad, huh?
Sister tells me, “I just can’t do this. I could never stay home. I’m doing things with my glue gun, I’ve polished the silver, polished the stainless steel, the laundry is done and folded, my house is clean, and now I’m bored.” And, it was only 11:00am. I explain “Oh, well, it sounds like you are doing to too much. You have to pace yourself you know?” And, when she tells me she is hungry (over the phone), I remind her to only eat one meal, because the day is still young and she could accidentally eat two lunches. Learn from my experiences. It happens so quickly that you are not even aware until it is too late. Much too late.